The Insider's Guide to Cancer in Your 20s and 30s

Don’t Call Us, We’ll Call You

Good News
I went to Memorial Sloan Kettering on Thursday and had excellent news: My tumors are stable, they have not grown (ye-haw)! I have to wait for the blood tests to come back next week to confirm. It made me think about this:

You’re leaving the doc’s office after a blood draw, a pap smear, or depositing some other bodily byproduct, and the doctor says, “We’ll call you in a week or two if something is wrong.”

You go home biting your fingernails and don’t know when to stop. Are the results in but they didn’t call because everything is fine? Or is there a slip of paper that says “You are dying” that fell behind the nurses’ desk and got chucked in the recycling bin by the nighttime custodial staff?

Caller Number #1
Even if your head does not dance with these neurotic visions, even if you have the utmost confidence in the administrative functioning of your doc’s office, never accept the pat answer: “Don’t call us we’ll call you.” Part of being a proactive patient is staying on top of your test results. In the medical system, small administrative errors can have major health consequences. It is simply good practice to call relentlessly until you have a definitive answer.

Do you get nervous waiting for routine test results? Do you trust them to call you back? Are you aggressive? How does the office staff treat you when you are persistent in calling for test results? Are you ever too intimdated by your doctor or their staff to ask for what you need?

#1. fantastic news, kairol! congratulations to you!
#2. i work in healthcare, and i think you are absolutely right. never wait for a doctor or over-worked hospital administrator to call you back with test results. there are many well-meaning yet overwhelmed people working in these systems; don’t let yourself fall through the cracks.

Happy about your good news. Can you imagine before your diagnosis being happy about stable disease? It goes to show our resiliency.

As for the mind games while waiting, I wrote an article for oncology professionals, entitled “Patient Patients,” about the difficulty of waiting for test results. I just discovered this article is not available online, so email me if you’d like to read it. In the meantime, hang in there.

As a teenager (fifteen when diagnosed, sixteen now) who had metastatic melanoma (and who has had five more biopsies since, about a billion blood draws, and tests to see if I have thyroid cancer on top of things!), the waiting game has never been fun to play. MD Anderson has been good about calling us on the last day of that promised week or two, but we learned pretty fast that if we’ve waited even fifteen days for that fourteen day promise, we call to check on things. So the nervousness is there, but it’s nice to know that if we stay on the ball, the results will come in.

It’s also nice to have a dermatologist who calls us literally the day he gets the results – even on the weekends. Probably the most dependable doctor I’ve ever had!

I recently started going to Duke down here in NC. I try to keep EVERYTHING in the Duke system, including primary care.

They have an online system that you can log into and see your appointments and clinical records. When the results are ready, it sends me an email notice. Lately, I’ve been getting the results well before the doctor calls. Actually, now my doctor just puts a note on the results, b/c she knows I’ll see them online!

It works perfect for me. I can even schedule or request appts online instead of spending chunks of time on the phone.

The doctors can see even more I think – like the actual imaging instead of a report (I think). So my PCP can see what the nuclear medicine guys, endocrinologist, etc. put up.

Only thing I can’t see? Emergency room report from a few weeks back.

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